The last few weeks have been a bit of a whirlwind with so many positive things happening, it’s been very difficult to actually review the impact until now. Firstly, I have been receiving some innovative holistic treatment for the last few months, which is beginning to make an incredible difference to how I am able to focus my life. I would like to thank my incredible team at St Georges hospital for helping me and encouraging me to find the appropriate support. If I’m honest I don’t think it is a coincidence that good things have happened since I have started to be able to view my life differently. My confidence is slowly returning, and with it my enthusiasm for the challenges that lie ahead, both personally and professionally. Confidence plays a major part in our lives, and I struggled to understand why it was draining from me as the years went on.
It wasn’t something that was ever in short supply in my life, but with continual health uncertainty over many years, there were many occasions I didn’t even want to leave the house! So as my demons tried to pull me down I did my best to push forward with my work and became empowered by my illness. Entering areas I had never been and facing challenges I never thought I would be, after all what did I have to lose as my life has been hanging by a thread for some time? In recent weeks I have given two very important presentations to really contrasting audiences, both with a very different impact.
My first was in London for my friends at Dimbleby Cancer Care, who were running a celebrity quiz evening and wanted me to remind people why they were actually giving their money. It was an incredible few minutes for me as the room fell extremely quiet whilst I spoke. As I returned to my seat I was congratulated by many people who are presenters on television saying how powerful my talk had been. But a couple of days after that I was flown to Lisbon in Portugal to present to a team of international executives from a large pharmaceutical company, who wanted to hear from me about how their treatment had improved my life. A doctor spoke before me, about why he used the treatment, then I completed the session about how the treatment had impacted my life. It was an incredible experience to have all the links in the treatment chain talking together and sharing experiences!
For the last seven years I have worked in between my treatment to do my best to ensure, that people were aware that living with cancer may just be the start of another struggle, now known as ‘survivorship.’ Of course anyone who is able to survive a cancer diagnosis is extremely grateful for that, but that is now no longer enough. Our medical system is full to bursting point but economically and socially if we do not do something practical soon, I feel we will have a very divided society. So I was delighted to receive a recent invitation from N.H.S London to share my views, as a guest speaker and expert panel member at a conference in London on the 29th October. I have done some work previously for this team who are in charge of cancer care in this country, and I am delighted that they see the long term value in collaborating more effectively with patients.
Finally I have also been invited to help train new starters at Anthony Nolan, by sharing my in depth knowledge of the stem-cell transplant process. This is a fabulous opportunity for all of us, which will ultimately mean that more people have a greater understanding of the impact that blood cancer and transplant can have on people’s lives. These are just several examples that I am seeing personally, of dialogue now beginning to open up between service providers and patients, who are actually ultimately the customer! Coming from a business background, I have never really understood the reluctance from health organisations to involve the patients in any serious decision making. My experience has shown me that in most cases we were in attendance purely so a box could be ticked, without really ever playing an effective part in the process. Don’t get me wrong, this has never been a speedy process, but I have seen a dramatic improvement recently.
I have been chipping away via my personal work for more than seven years, I never believed it was in vain, but when you are affected by cancer, time is rarely your friend. However I am feeling that the key decision makers in this process totally understand the issues, and there is a real intent to improve things. According to official sources, by 2020 50% of us will be directly affected by cancer, so doing nothing is not an option. Surely if all parties can work together, we can make life so much better for people affected by cancer, which is really all of us, as I am sure everyone knows someone who has cancer. I will be doing my best to ensure that this progress is accelerated and not lost ‘in the long grass.’
As always, the above is my personal experience and views and it would be great to hear yours. Do you feel that the patient voice is becoming more important? Are you able to get your voice out there? Can you see improvement in how we are dealing with the issues around cancer support?